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Bad news and first impressions: Patient and family caregiver accounts of learning the cancer diagnosis

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  • Schaepe, Karen Sue

Abstract

Studies in medical journals regarding the delivery of a cancer diagnosis typically focus on a single clinic episode where the definitive news is disclosed to the patient by the physician. Far less research characterizes the diagnosis in the way patients and their family members often describe it: as a longitudinal, multi-sited search process culminating in a news-telling and realization event. This article analyzes lay accounts of learning a cancer diagnosis drawing on ethnographic interviews among a purposive sample of 28 patients recently diagnosed with leukemia, myeloma, or lymphoma and 30 of their family caregivers. The participants, recruited at a large cancer center in the United States, were asked to describe "the day" they learned the diagnosis. Narrative analysis revealed that in almost every case, detailed descriptions of preliminary events - such as the pace and sequence of testing; smooth or disorganized transitions between care providers; and the timeliness or delays in diagnosis - were used to contextualize the actual episode of hearing the diagnosis and reacting to the news. This study finds that patients' and caregivers' experience of the medical system prior to hearing the news played an important role in the way the news was ultimately internalized. The findings also provide empirical support for integrating lay perspectives on the diagnostic experience into future cancer disclosure guidelines.

Suggested Citation

  • Schaepe, Karen Sue, 2011. "Bad news and first impressions: Patient and family caregiver accounts of learning the cancer diagnosis," Social Science & Medicine, Elsevier, vol. 73(6), pages 912-921, September.
  • Handle: RePEc:eee:socmed:v:73:y:2011:i:6:p:912-921
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    References listed on IDEAS

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    1. Clarke, Juanne N. & James, Susan, 2003. "The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome," Social Science & Medicine, Elsevier, vol. 57(8), pages 1387-1395, October.
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    2. Véra Forcheron & Elodie Sacareau & Jérôme Bourgeois & Arnaud Pouchon & Mircea Polosan & Yoann Gaboreau & Clément Dondé, 2023. "Experience, impact and needs of informal parental caregivers around the communication of a diagnosis of schizophrenia," International Journal of Social Psychiatry, , vol. 69(1), pages 101-110, February.
    3. Russell, Ginny & Kelly, Susan E. & Ford, Tamsin & Steer, Colin, 2012. "Diagnosis as a social determinant: The development of prosocial behaviour before and after an autism spectrum diagnosis," Social Science & Medicine, Elsevier, vol. 75(9), pages 1642-1649.
    4. Heritage, John & McArthur, Amanda, 2019. "The diagnostic moment: A study in US primary care," Social Science & Medicine, Elsevier, vol. 228(C), pages 262-271.
    5. Helen Noble & Jayne E Price & Sam Porter, 2015. "The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis," Journal of Clinical Nursing, John Wiley & Sons, vol. 24(7-8), pages 927-936, April.
    6. Gøril Ursin, 2020. "Framing Dementia Care Practices: The Politics of Early Diagnosis in the Making of Care," SAGE Open, , vol. 10(3), pages 21582440209, July.

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